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A rough time here.

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I am a gay man in my 40s and have been with my husband for 4 years.  A few months ago got sick. First it was swollen painful gums, then diarrhea, then neuropathy, then disseminated shingles (all over). I lost 65 lbs.  My doctor was running all kinds of tests and I came back positive for HIV. My husband went to get tested and he is negative (thank God). He is going to go again in a couple of months to be sure. 

My CD4 count is 15, and I have CMV in my intestines and colon. I started taking Atripla, Valcyte, Valtrex, and several antibiotics.  I obviously have been positive for 4-5 years, but have only been with my husband since then and we've only had unsafe sex a couple of times.

This has been the most pain I've ever felt. The shingles are healing but the neuropathy is still very painful all the time.  I've been going to work through all of this because I'm terrified if I miss work I'll lose my job and thus my insurance. Plus I'm the main provider in the family. Beginning Atripla was terrifying because it's so expensive and I know I can't ever stop taking it. I read online that since my CD4 is so low I probably will never get it back up above 300, and that may take years. Not sure if that's true, but it's scary.  Now my left eye has started hurting and I'm worried it has to do with the CMV.  I'm going to see an eye doctor as soon as I can.

My husband and I have stopped having sex.  I don't blame him, and asked if he wanted to break up and get a divorce.  He said he needed to think about it, but he's still here. I'm scared he will eventually leave, but I also love him and want him to be happy. I even thought about suggesting an open relationship, but we're not really like that.  I'm not sure if we could make that work.

It's hard to have any hope for my relationship or my health.  I cry a lot.  I have a lot of fear, and the only support group I've found meets during my work hours so I haven't gone. I'm afraid I'll soon be blind, crippled, hospitalized, or worse.

Please give me advice or comments.  Has anyone been able to keep their relationship going, and how?  Does the info about CD4 count staying low sound correct or is that not true? Does anyone know how to lessen the pain from the neuropathy?  Are my chances of surviving this as low as I think?

Thank you for reading.

Miss Philicia:
1) there is no reason that you can't keep a serodiscordant relationship going. You're both in your 40's, not teenagers -- educate yourself on how to go about this. Are you implying that the two of you refuse to have sex with the use of condoms? If so, then explore having your partner go on PrEP

2) with a diagnosis such as yours, low initial cd4 count, it very well may take years to reach 300. However, there is no reason to think that is the highest you will every go. It's possible, but not a given.

3) as far as neuropathy, it's an extremely horrible thing (I have it myself) -- but there are various forms of neuropathy and while I do not wish to give you false hope, there are a few forms of neuropathy that present themselves with low cd4 counts and then somewhat dissipate once your immune system improves. Of course, it's entirely possible that won't happen. What is your doctor doing to address this issue in terms of pain relief?

4) as far as your eyes/CMV by all means go to an eye doctor

5) the loss of 65 lbs is concerning unless you were overweight to begin with -- what is your height and current weight. How is your doctor addressing this issue?

6) Back to the partner issue -- if this is really more of a psychological issue for him then you should consider joint therapy or peer counseling. Do you live in an urban area that might have something geared towards gay couples in such situations? If I can go by your user name that you live in/near Dallas, TX you should contact the LGBT community center there and see of they have peer counseling and explain your situation. Or similarly an AIDS Service Organization for a therapist.

Hi Philicia, thank you for reading and responding.  My doctor recommended a neurologist but I haven't made the appointment yet. I have been worried about missing work plus wanted to see how much my insurance was covering (but I see it has been covering all the doctor visits so far).  I tried complex vitamins B, but not helping much.
I'm currently 6'2" and 173 lbs. My doctor has only said she thinks I will gain weight back after taking my meds for a while.
I think we should seek counseling, but I was waiting for him to determine how he wants to handle the situation. I know he is very scared too.  Not just for me, but for staying negative himself.

Wow I'm sorry, you sure are being put through the wringer.

Please stick around here and post a lot. It will help reverse the isolation.

Seems like you are doing a good job going after answers for your medical challenges.  We carry a lot of fear when we don't know whats going on.  Always keep on top of this from now on.

My advice is you will need to keep on top of the financial challenges, and the affective ones too.  So you're going to have to actively work at keeping your relation and making it satisfying for the both of you.  As Miss P said.

Financially as well, I hear there is pressure on you.  So thats going to factor into the relation, IMO.  First of all you'll need to figure out what the future requires for medical insurance - I am American and I held this deep deep fear of lack of access to medical care all through the 80s and 90s - its only natural because there were, and continue to be, so many hardship stories...  But remember the situation is always changing and some of our fears, set in our bones, are based on older realities.  At least, for example, there is ACA now, and a national system of getting medical care to to HIV+ people with lower incomes or no income... 

Maybe eventually there might be lifestyle adjustments if there are income adjustments coming, and/or your husband might have to contribute more to the joint income.  Whatever it is, you have to face these things together as a couple, IMO, or the couple isn't working...  Can't all be on your shoulders... IMO

DallasJ:  my thoughts are with you.  You have a lot on your plate right now, so take a deep breath and sort out things one at a time.  Things do get better.

My CD4 was 9 at diagnoses (and PCP), about 9 months in it was at 131 or so.  I'm due next month for an appointment with my ID and related blood tests.  I'm also on Atripla and reached UD very fast.  The CD4 rates is slower but it will come in time.

I do have some neuropathy in both feet (no pain, just tingling), but I think that's the neuropathy has been lessening over the course of my treatment, so perhaps Miss Philicia is correct that some forms improve when CD4's rise.

I'm sorry to hear of your troubles, but things do get better and will sort themselves out in time.  For now, just keep your faith in the meds and follow all medical instructions.


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